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#1 Kristine

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Posted 27 August 2008 - 01:14 AM

Hello to everybody!
I am new member of this site...serching info about scleroderma, found this web....
My story is different...I got this problem since I was born...I am from Latvia..doctors in that time didn't knew what I got...now I have 22...and seriously start to think about it...I found more info and start to treat myself...but I am scared from that if the problem is deeper than I thought...now I have problems with lungs....ohhh I hope the illness will not go deeper, just stay on my face...I am still waiting for analysis...

#2 janey

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Posted 27 August 2008 - 03:34 AM

Kristine,
Welcome to the ISN Forums! If you are looking for information and support, you certainly have found the right place. I'm sure you have already seen the home scleroderma page that links to the various possible symptoms, treatments, etc. I've provided the link just in case.

You are the first case that I've heard of that has had this since your were born. It's no wonder that the doctors were confused. I hope it hasn't been to bad for you. That rarely happens from what I've read. Do you know what type of scleroderma you have?

I'm sorry that more problems are starting to present themselves. Please continue to see you doctors for treatment, especially if you suspect lungs issues. The sooner you get treatment the better chance of stabilizing the situation.

Again, welcome! I look forward to hearing more about you. Please keep us informed.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 Purr

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Posted 27 August 2008 - 04:29 AM

Hello Kristine,

Welcome. You've come to the right place. Please keep us updated on how you are doing, to ask questions, or even just express your feelings. I'm sure we'd all like to help you as much as we can.

Take care,
Christy
Love makes the world go around!

#4 Cheryle

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Posted 27 August 2008 - 06:32 AM

Kristine,
Welcome. I am so glad you have joined us. You will find lots of suport and information here.
I also have limited ( Crest) Scleroderma. I have lung problems too. I am on steroid drugs to reduce the inflammation.
Please let us know when you get the analysis results of your tests.
Cheryle

#5 Sweet

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Posted 27 August 2008 - 06:44 AM

Hi Kristine,

Welcome! I'm so glad you've joined us. I'm sorry you are suffering so. I've never heard of anyone being born with this, that is incredible. I feel so badly for you! I will looking forward to finding out your test results. Please do keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Shelley Ensz

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Posted 27 August 2008 - 06:54 AM

Yes, people of every age can be affected by scleroderma -- from infants to very senior citizens...as well as either sex, and it occurs fairly evenly throughout the entire world. It quite literally knows no bounds! See About Scleroderma.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Snowbird

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Posted 27 August 2008 - 02:03 PM

Hi Kristine

I just wanted to say hello too! You have definitely come to the right place, there is always someone on here that can answer your questions. I also hope you keep us updated on how you are doing and what your test results show. Take care!
Sending good wishes your way!

#8 razz

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Posted 27 August 2008 - 03:41 PM

Kristine,

I am glad you found us on the web. I am sorry to hear you are having problems breathing. Are you seeing a doctor right now? I hope you feel better soon. Everyone here is supportive and so helpful. Please come back and let us know how you are doing.


Best wishes,
Razz
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#9 canon

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Posted 27 August 2008 - 03:45 PM

Thanks for joining us at the site Kristine,

Sorry you are going through so much and for so long too. Hope they find out soon what is happening with your lungs. Please keep in touch as you go through what is happening. It can be pretty difficult at times just talking about things but it does seem to help. They all seem so nice here.

Wishing you speady results with your testing,

Canon/Judy
A happy heart is good medicine.

#10 Kristine

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Posted 28 August 2008 - 05:26 AM

Today I went to meet doctor who treat lungs....I am so happy....I have right lung pneumonia, thats way starts esay asthma...but will be ok with some physiotherapies...they said, that lung will be ok, and analysis are good...that means I have localized scleroderma on my face...I have no reason to worry about systemic scleroderma....
Also found a good dermatologist...already started to treat my face...and I can say good results....she is doing cryomassage on my cheek....and hope soon will be better....under the eye I can't do that, because skin is so thin...that's why every day I put tonal cream on my face :( when I was a child other children were laughing, they where saying that somebody was punching me under eye :(But now they see just only my not proportional face, right side stopped growing when I was a teenager, that is only a cosmetic defect and I hope that someday I will got an operation and move closer to my dream :) This illness has made me stronger since teenage age,when you must be strong and protect yourself from stupid people, who are staring on you....

#11 Purr

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Posted 28 August 2008 - 06:34 AM

I'm very happy for Kristine!!! It sounds like everything is going in the right direction for you and you've found good medical help.

Keep up the good attitude. Take care.

Christy
Love makes the world go around!

#12 Kristine

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Posted 28 August 2008 - 07:12 AM

I also hope that medical help will help me :)

#13 Kamlesh

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Posted 28 August 2008 - 07:55 AM

Hi Kristine,

I have lung involvement too. I was on Cellcept for about two years and was successfully control any further damage. Now I do breathing exercises to maintain and improve my lung capacity. It can be managed and I hope you will start treating it soon.
Take care!
Kind regards,

Kamlesh


#14 Amanda Thorpe

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Posted 28 August 2008 - 12:13 PM

Hello Kristine

How brave you have been in dealing with this illness. Amazing that as a teenager you would adapt such a mature and well serving attitude.

Keep posting!

Amanda
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#15 Snowbird

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Posted 28 August 2008 - 12:22 PM

Hi Kristine

I am very happy for you too, it's good news that your results are better than you were expecting! :) :) It sounds like you have good doctors helping you. I hope you stay with us on the site and keep asking all your questions...someone here always seems to be able to help out.
Sending good wishes your way!

#16 Nina

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Posted 28 August 2008 - 01:45 PM

Kristine ~ it's wonderful to hear you talk of your illness in such positive tones ~ that you were able to deal since your teen years is amazing. Hold on to your dream, these days, anything is possible. So happy your tests came back better than expected...that's wonderful!!!
Please keep coming back ~ you will find many good insights and infromation and most of all many good friends!
Much love,
NINA (DE)

#17 smurfette

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Posted 28 August 2008 - 01:49 PM

Kristine
Welcome! Your results sound very promising and it sounds like you have found doctors that understand what is needed to help you on the way to good disease management. Please feel free to ask questions, keep us informed about what is going on with you and your disease, or just vent. We are so glad to be here to support you or supply information. There is a wealth of information on this site. The people here are so knowledgeable and kind. You have been very strong and brave for a long time. Feel free to call on us for help and support so you are no longer doing it all alone..
Smurfette

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#18 Kristine

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Posted 28 August 2008 - 11:23 PM

Thanks to everybody for support...I am glad,that I am not alone in all world :) I found also another treatment, but I don't know what it is in english, because I am Latvian. This treatment is good for people who have thick skin, this procedure makes soft skin...

I can tell to everybody, what is a secret to be positive about your illness:

Is love in family...I have big family (I think), parents,2 brothers and sister...I used to ask my parents, why I am different from brothers and sister, but they haven't an answer on that, but they love me like I am equal to my brothers and sister, that makes our family stronger....

Find out who are your real friends....real friends always be with you...I found them...also found my big love when I was 19....now I am 22 and I am happy,because soon we will live together :)

Make your own purpose for life...step by step with small purposes you will be closer to your life's purpose....purpose can be everything what you want to reach in your life....don't be afraid...go one step forward and made it...

Generally please forget about depression, what you are thinking about your illness, it will make you just only weak, but you must be strong...if you have any problems, just smile, but if its too hard, then cry for happiness what will be when you resolve a problems....

I live like that...It makes me stronger....I advise to everybody to be happy and enjoy your life for all 100% and to those who are not able to understand you, just say, that your life is more colorful than their life ... and they all will be shocked for this sentence (from my experience) :)

#19 Kristine

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Posted 28 August 2008 - 11:35 PM

Strong person means that he love him/herself :wub:

#20 truman

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Posted 29 August 2008 - 12:54 AM

Excellent insight Kristine :). As my friend who had cancer and myself were discussing yesterday; we never asked "why me?". We just got on with trying to get well. For my friend a nurse, she said the strangest thing for her was being on the other side of the situation. What doesn't make us weaker...makes us stronger.

Keep up the positive attitude :lol:.
Tru

It is what it is...........